Beginning a project in clinical research is like getting on a train with an unknown destination.
It’s full of mystery and excitement but you never know whether you’ll have a compartment or be going third class, whether the train has a diner or not, whether the trip will cost a dollar or all you’ve got and, most of all, whether you are going to end up where you intended or in a foreign place you never dreamed of visiting.
When our team members got on this train at the various stations, we were hoping that our destination was better treatment for severely brain-injured children. None of us dreamed that if we achieved that goal, we would stay right on the train till we reached a place where brain-injured children might even be made superior to unhurt children.
The trip has thus far taken a half-century. The accommodations were third class and the diner served mostly sandwiches, night after night, often at three in the morning. The tickets cost all we had, and while some of us did not live long enough to finish the trip none of us would have missed it for anything else the world has to offer. It’s been a fascinating trip.
The original passenger list included a brain surgeon, a physiatrist (an M.D. who specializes in physical medicine and rehabilitation), a physical therapist, a speech therapist, a psychologist, an educator, and a nurse. Now there are more than a hundred of us all told, with many additional kinds of specialists.
The little team was formed originally because each of us was individually charged with some phase of the treatment of severely brain-injured children—and each of us individually was failing.
If you are going to choose a creative field in which to work, it is difficult to pick one with more room for improvement than one in which failure has been one hundred percent and success is nonexistent.
When we began our work together over fifty years ago we had never seen, or heard of, a single brain-injured child who had ever gotten well.
The group that formed after our individual failures would today be called a rehabilitation team. In those days so long ago, neither of those words were fashionable and we looked upon ourselves as nothing so grand as all that. Perhaps we saw ourselves more practically and more clearly as a group who had banded together, much as a convoy does, hoping that we would be stronger together than we had proved to be separately.
We began by attacking the most basic problem that faced those who dealt with brain-injured children fifty years ago. This problem was identification. There were three very different kinds of children with problems who were invariably mixed together as if they were the same. The fact is that they were not even ninety-second cousins. They got lumped together in those days (and, tragically, they still are in much of the world) for the very poor reason that they frequently look, and sometimes act, the same.
The three kinds of children who were constantly put together were deficient children with brains that were qualitatively and quantitatively inferior, psychotic children with physically normal brains but unsound minds, and finally truly brain-injured children who had good brains but which had been physically hurt.
We were concerned only with the last type of children, who had suffered injuries to a brain that at conception was perfectly good. We came to learn that although the truly deficient child and the truly psychotic child were comparatively few in number, hundreds of thousands of children were, and are, diagnosed as deficient or psychotic, while they were actually brain-injured children. Generally such mistaken diagnoses came about because many of the brain-injured children incurred injuries to a good brain before they were born.
When we had learned, after many years of work in the operating room and at the bedside, which children were truly brain-injured, we could then begin to attack the problem itself—the injured brain.
We discovered that it mattered very little (except from a research point of view) whether a child had incurred his injury prenatally, at the instant of birth, or postnatally. This was rather like being concerned about whether a child had been hit by an automobile before noon, at noon, or after noon. What really mattered was which part of his brain had been hurt, how much it had been hurt, and what might be done about it.
We discovered further that it mattered very little whether a child’s good brain had been hurt as a result of his parents having an incompatible Rh factor, his mother having had an infectious disease such as German measles during the first three months of pregnancy, insufficient oxygen having reached his brain during the prenatal period, or because he had been born prematurely. The brain can also be hurt as a result of protracted labor, by the child’s falling on his head at two months of age and suffering blood clots on his brain, by having a high temperature with encephalitis at three years of age, by being struck by an automobile at five years of age, or by any of a hundred other factors.
Again, while this was significant from the research point of view, it was rather like worrying about whether a particular child had been hit by a car or a hammer. The important thing here was which part of the child’s brain was hurt, how much it was hurt, and what we were going to do about it.
In those early days, the world that dealt with brain-injured children held the view that the problems of these children might be solved by treating the symptoms which existed in the ears, eyes, nose, mouth, chest, shoulders, elbows, wrist, fingers, hips, knees, ankles, and toes. A large portion of the world still believes this today.
Such an approach did not work then and could not possibly work.
Because of this total lack of success, we concluded that if we were to solve the multiple symptoms of the brain-injured child we would have to attack the source of the problem and approach the human brain itself.
While at first this seemed an impossible or at least monumental task, in the years that followed we and others found both surgical and nonsurgical methods of treating the brain itself.
We held the simple belief that to treat the symptoms of an illness or injury, and to expect the disease to disappear, was unmedical, unscientific, and irrational, and if all these reasons were not enough to make us abandon such an attack, then the simple fact remained that brain-injured children approached in such a manner never got well.
On the contrary, we felt that if we could attack the problem itself, the symptoms would disappear spontaneously to the exact extent of our success in dealing with the injury in the brain itself.
First we tackled the problem from a nonsurgical standpoint. In the years that followed, we became persuaded that if we could hope to succeed with the hurt brain itself we would have to find ways to reproduce in some manner the neurological growth patterns of a well child. This meant understanding how a well child’s brain begins, grows, and matures. We studied intently many hundreds of well newborn babies, infants, and children. We studied them very carefully.
As we learned what normal brain growth is and means, we began to find that the simple and long-known basic activities of well children, such as crawling and creeping, are of the greatest possible importance to the brain. We learned that if such activities are denied well children, because of cultural, environmental, or social factors, their potential is severely limited. The potential of brain-injured children is even more affected.
As we learned more about ways to reproduce this normal physical pattern of growing up, we began to see brain-injured children improve—ever so slightly.
It was at about this time that the neurosurgical components of our team began to prove conclusively that the answer lay in the brain itself, by developing successful surgical approaches to it. There were certain types of brain-injured children whose problems were of a progressive nature, and these children had consistently died early. Chief among these were the hydrocephalics, the children with “water on the brain.” Such children had huge heads due to the pressure of cerebrospinal fluid that could not be reabsorbed in the normal manner due to their injuries. Nevertheless the fluid continued to be created as in normal people.
No one had ever been quite so foolish as to try to treat the symptoms of this disease by massage or exercise or braces. As the pressure on the brain increased these children had always died. Our neurosurgeon, working with an engineer, developed a tube which carried the excess cerebrospinal fluid from the reservoirs called the ventricles, deep inside the human brain, to the jugular vein and thus into the blood stream, where it could be reabsorbed in the normal manner. This tube had within it an ingenious valve that would permit the excess fluid to flow outward while simultaneously preventing the blood from flowing back into the brain.
This almost magical device was surgically implanted within the brain and was called “the V-J shunt.” The lives of more than twenty-five thousand children were saved by this simple tube. Many of these children were able to live completely normal lives and go to school with their peers.
This was beautiful evidence of the complete futility of attacking the symptoms of brain injury, as well as the unassailable logic and necessity for treating the hurt brain itself.
Another startling method will serve as an example of the many types of successful brain surgery that are in use today to solve the problems of the brain-injured child.
There are actually two brains, a right brain and a left brain. These two brains are divided right down the middle of the head from front to rear. In well human beings, the right brain (or, if you like, the right half of the brain) is responsible for controlling the left side of the body, while the left half of the brain is responsible for running the right side of the body.
If one half of the brain is hurt to any large degree, the results are catastrophic. The opposite side of the body will be paralyzed, and the child will be severely restricted in all functions. In those days some children had constant, severe, and convulsive seizures which did not respond to any known medication.
It need hardly be said that such children also die.
The ancient cry of those who stood for doing nothing had been chanted over and over for decades. “When a brain cell is dead it is dead and nothing can be done for children with dead brain cells, so don’t try.” But by 1955 the neurosurgical members of our group were performing an almost unbelievable kind of surgery on such children; it is called hemispherectomy.
Hemispherectomy is precisely what that name implies—the surgical removal of half of the human brain.
At that time we saw children with half a brain in the head and with the other half, billions of brain cells, in ajar at the hospital—dead and gone. But the children were not dead.
Instead we saw children with only half a brain who walked, talked, and went to school like other children. Several such children were above, average, and at least one of them had an I.Q. in the genius area.
We had long held that, contrary to popular belief, a child might have ten dead brain cells and we would not even know it. Perhaps, we said, he might have a hundred dead brain cells, and we would not be aware of it. Perhaps, we said, even a thousand.
Not in our wildest dreams had we dared to believe that a child might have billions of dead brain cells and yet perform almost as well and sometimes even better than an average child.
Now the reader must join us in a speculation. How long could we look at Johnny, who had half his brain removed, and see him perform as well as Billy, who had an intact brain, without asking the question, “What is wrong with Billy?” Why did not Billy, who had twice as much brain as Johnny, perform twice as well or at least better?
Having seen this happen over and over again, we began to look with new and questioning eyes at average children.
Were average children doing as well as they might? Here was an important question we had never dreamed of asking.
In the meantime, the nonsurgical members of the team had acquired a great deal more knowledge of how such children grow and how their brains develop. As our knowledge of normality increased, our simple methods for reproducing that normality in brain-injured children kept pace. By now we were beginning to see a small number of brain-injured children reach wellness by the use of the simple nonsurgical methods of treatment which were steadily evolving and improving.
It is not the purpose of this book to detail either the concepts or the methods used to solve the multiple problems of brain-injured children. The book What To Do About Your Brain-Injured Child deals with the treatment of the brain-injured child. However, the fact that this is being accomplished daily is of significance in understanding the pathway which led to the knowledge that well children can perform infinitely better than they are doing at present. It is sufficient to say that extremely simple techniques were devised to reproduce, in brain-injured children, the patterns of normal development.
Soon we began to see severely brain-injured children whose performance rivaled that of children who had not suffered a brain injury.
As these techniques improved even more, we began to see brain-injured children emerge who could not only perform as well as average children but, indeed, who could not be distinguished from them.
As our understanding of neurological growth and normality began to assume a really clear pattern, and as methods for the recapitulation of normality multiplied, we even began to see some brain-injured children who performed at above-average, or even superior, levels.
It was exciting beyond measure. It was even a little bit frightening. It seemed clear that we had, at the very least, underestimated every child’s potential.
This raised a fascinating question. Suppose we looked at three seven-year-old children: Albert, who had half his brain in the jar; Billy, who had a perfectly normal brain; and Charley, who had been treated nonsurgically and who now performed in a totally normal way, although he still had millions of brain cells dead and gone.
Albert, with half his brain gone, was as intelligent as Billy. So was Charley, with millions of dead cells in his head.
What was wrong with nice, average, unhurt Billy?
What was wrong with well children?
For years our work had been charged with the vibrancy that one feels prior to important events and great discoveries. Through the years the all-enveloping fog of mystery which surrounded our brain-injured children had gradually dispelled. We had also begun to see other facts for which we had not bargained. These were facts about well children. A logical connection had emerged between the brain-injured (and therefore neurologically disorganized) child and the well (and therefore neurologically organized) child, where earlier there were only disconnected and disassociated facts about well children. That logical sequence, as it emerged, had pointed insistently to a path by which we might markedly change man himself—and for the better. Was the neurological organization displayed by an average child necessarily the end of the path?
Now with brain-injured children performing as well as, or better than, average children, the possibility of the path extending farther could be fully seen.
It had always been assumed that neurological growth and its end product, ability, were a static and irrevocable fact: This child was capable and that child was not. This child was bright and that child was not.
Nothing could be further from the truth.
The fact is that neurological growth, which, we had always considered a static and irrevocable fact, is a dynamic and ever-changing process.
In the severely brain-injured child we see the process of neurological growth totally halted.
In the “developmentally delayed” child we see this process of neurological growth considerably slowed.
In the average child it takes place at an average rate, and in the superior child, at above-average speed.
We had now come to realize that the brain-injured child, the average child, and the superior child are not three different kinds of children but instead represent a continuum ranging from the extreme neurological disorganization which severe brain injury creates, through the more moderate neurological disorganization caused by mild or moderate brain injury, through the average amount of neurological organization which the average child demonstrates, to the high degree of neurological organization which a superior child invariably demonstrates.
In the severely brain-injured child we had succeeded in restarting this process which had come to a halt, and in the “developmentally delayed” child we had accelerated it.
It was now clear that this process of neurological growth could be speeded as well as delayed.
Having repeatedly brought brain-injured children from neurological disorganization to neurological organization of an average or even superior level by employing the simple nonsurgical program that had been developed, there was every reason to believe that this same program could be used to increase the amount of neurological organization demonstrated by average children. Part of this program is to teach very young brain-injured children to read.
Nowhere is the ability to raise neurological organization more clearly demonstrated than when you teach a well baby to read.